Opeskin, Brian --- "Engaging the Public - Community Participation in the Genetic Information Inquiry" [2002] ALRCRefJl 11; (2002) 80 Australian Law Reform Commission Reform Journal 53

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Reform Issue 80 Autumn 2002

This article appeared on pages 53 – 58 & 73 of the original journal.

Engaging the public: community participation in the genetic information inquiry

By Brian Opeskin*

“Whatever form it takes, the consultation process gives the reform process a democratic base which ... amounts to a real empowerment of the many groups or individuals who want an active voice in the law reform process.”¹

It would be possible to produce a law reform report in the cloistered environment of an ivory tower, surrounded by published texts and journal articles penned by learned judges, practitioners and academics – possible, but not desirable. A fundamental characteristic of the methodology of most law reform bodies in Australia is that they are participatory in nature, with an emphasis on community engagement of individuals, groups and organisations. This methodology was strongly influenced in Australia by Justice Michael Kirby, the founding Chairman of the Australian Law Reform Commission (ALRC), and it has been a central feature of the ALRC’s work ever since.

This article reviews the reasons for, and forms of, public participation in the work of the ALRC, with particular regard to its current reference on the protection of human genetic information. That reference was given to the ALRC in February 2001 as a joint inquiry with the Australian Health Ethics Committee (AHEC). The original reporting date of 30 June 2002 was recently extended to 31 March 2003 to facilitate the processes of public consultation and discussion. This is especially important in a reference such as this one, which has the potential to affect many individuals in a wide variety of contexts such as employment, insurance, criminal justice, and the provision of health services by medical practitioners and hospitals.

Why involve the public?

Governments seek and obtain policy advice from many quarters. Chief among these are government departments. Yet, despite their frequent involvement with detailed legislative reform, departments are often not well suited to engaging in the tasks of inquiry and reporting given to law reform bodies. Extensive processes of consultation are often beyond the capacities of many government departments because of constraints of time and resources.² Moreover, because the ALRC is an independent statutory authority, many members of the community seem to feel able to speak frankly (and sometimes confidentially) to the ALRC in circumstances in which they may not be willing to speak directly to ‘government’.³

The desirability of engaging the public in the process of law reform may be explained in many ways. For convenience, these can be divided into three groups:

• benefits for those consulted;

• benefits for the process of law reform; and

• benefits in terms of enhanced effectiveness of the law once reformed.

Benefits for those consulted

An ancient republican virtue is that of engagement in civic life. Aristotle observed that ‘man is by nature a political animal’: an individual’s contribution to the functioning of the polity is an important part of civic life. Public consultation enables individuals to fulfil their role as ‘political animals’ by contributing to the formulation of laws governing the community. In a speech given in 1995 to celebrate the 20th anniversary of the ALRC, the then Attorney-General, Michael Lavarch, described this democratic function of the ALRC as an ‘invaluable bridge’ between people and the law.⁴ As described below, civic participation is possible through many channels, including public meetings and making submissions.

An additional benefit for those consulted is the educative function of public consultation, both in relation to the process of law reform and the substance of the law under review. This has been an important feature of the genetic information reference because of its challenging scientific basis and the recency of many of the relevant scientific advances. Some members of the community were educated before the Nobel Prize winning discovery in 1953 by Watson and Crick of the double helix nature of DNA, which has become part of the common culture. Even for those who have been educated more recently, the speed of scientific development in the field of genetics regularly demonstrates the need for lifelong learning. The ALRC recognised this in formulating its Issues Paper for this reference, Protection of Human Genetic Information (IP 26). The Issues Paper devotes substantial space to explaining the background to emerging issues in human genetics, as well as providing a ‘genetics primer’ for the uninitiated. The structure of public consultations to date has reflected the importance of the educative function of broad community participation. At least half of each public meeting has been devoted to explaining key attributes of genetic information and identifying the challenges that these pose for society, and for law reform in the context of the present reference. Judging by the responses so far, these efforts have been much appreciated and have achieved the goal of laying a foundation of understanding for those who have attended.

Enhancing the law reform process

Public consultation also yields many practical benefits for the process of law reform. Reading the statute book and reported judicial decisions often gives an incomplete account of the way in which the law operates in practical situations. For example, legislation currently permits life insurers to discriminate among insurance applicants on the basis of their known genetic test results in most cases. Yet a reading of the statute book cannot reveal the important role of insurance agents and brokers in influencing the decisions of individuals in applying, or not applying, for insurance where there is a family history of a particular genetic disorder. Those with day to day experience of the law can indicate how current law and practice actually affects them.⁵ In this way, the contribution of the public through the consultation process can help orient thinking, stimulate further work, keep the focus on practical considerations and lead to the refinement or modification of positions taken during the course of an inquiry.⁶

In addition to this broad benefit, public engagement also provides detailed technical advice by relevant professionals. A law reform body such as the ALRC is periodically thrown into different areas of law by the receipt of new references from the Attorney-General. A quick perusal of a list of the Commission’s past reports shows that the topics vary widely from quite technical references (such as marine insurance – ALRC 91) to those of broad social policy (such as equality before the law – ALRC 69).⁷ The references also span many different fields from commerce, to medicine, to crime. It is important that the ALRC be able to ‘skill-up’ quickly in difficult and diverse areas of law. The establishment of an advisory committee – a panel of experts – at the commencement of each reference is an important part of this process. The consultation program is another important plank. In the genetics reference, the ALRC and AHEC have been able to draw on the technical advice of leading Australian geneticists, bioethicists, privacy and discrimination lawyers, and so on. Moreover, the establishment of links with relevant overseas bodies has facilitated the flow of comparative material into the inquiry’s processes of deliberation. This has been enhanced by a modest program of consultations in Europe. For the purpose of assessing the ‘global dimensions’ of these issues, as the terms of reference require us to do, further consultations are planned for the United Kingdom and North America.

A further benefit of public consultation is that it helps to identify competing interests in relation to any proposed reform. The methodology of law reform is generally one of analysing the relevant law, identifying its weaknesses, considering alternative models of regulation, documenting community and expert opinion in relation to those models, and providing a carefully reasoned argument in favour of a preferred approach. This methodology has considerable advantages for government – it enables different groups to comment on proposed reforms and it permits an examination of different ways in which a desired end can be achieved before governments commit themselves to a particular legislative program.⁸ This is not always possible when reforms are developed within government departments. The process undertaken by law reform agencies can make the passage of reform initiatives smoother for government, and therefore more achievable, because the interests of different groups are already known and have been assessed.

Effective reform outcomes

Public consultations also play a key role in ensuring that suggested reforms are effective in practical terms. Sometimes the mere fact that a law reform body is inquiring into a particular field and soliciting public opinion on reform encourages changes in current practices. Benson and Rothschild, writing of the experience of Royal Commissions of inquiry, have remarked that the ‘fact that a [review] has been appointed creates a climate of opinion which can often be effective in bringing about changes of thought and attitude ... which would not have happened if the [review] had not been appointed. Some hold the view that this is the major benefit ... and is of more practical value than the subsequent decisions which may or may not be taken.’⁹

It would be potentially misleading to claim that the inquiry into the protection of human genetic information has precipitated identifiable changes in the practices of key stakeholders. However, it is worth noting that contemporaneously with this inquiry the life insurance industry, under the auspices of its peak professional body, the Investment and Financial Services Association, has been reviewing its policy on the use of genetic information in assessing risk for mutually rated insurance. Similarly, various medical research institutions have been reviewing the nature of the consent forms used in relation to taking genetic samples from human subjects. While such changes may, in some instances, pre-empt the need for ALRC and AHEC recommendations, they demonstrate the value of the inquiry process in focusing a spotlight on contentious issues of public policy.

An additional attribute of effective reform relates not merely to the initial adoption of changed laws, codes of practice or ethical guidelines, but to the success of those changes in altering practical patterns of behaviour in the longer term. A significant benefit of public participation is that communities may offer a qualitatively better source of policy ideas. As two commentators recently observed, ‘policy processes that involve those upon whom they will impact are more likely to gain the support necessary for successful implementation’ because the policies are more likely to be relevant to the needs that they purport to address.¹⁰ An example of this in the genetic information reference is the regulation of genetic samples for human medical research. At present, publicly funded research is regulated by ethical guidelines established under the auspices of the National Health and Medical Research Council (NHMRC). Because successful implementation of any reform will depend on the adoption of appropriate ethical practices by medical researchers, it is clearly desirable to seek the views of that constituency in formulating recommendations for reform.

However, it is important to strike a note of caution here. To say that reforms are more effective when they have the support of those affected is not to say that law reform should take place by a process of plebiscite. Public opinion is not always the preferred basis for social action, since the public is sometimes inadequately informed or misinformed about issues surrounding a particular area of law or contentious public policy. On the other hand, it is an important function of a law reform agency to ensure, through the public consultation process, that recommendations for reform are not too far out of step with popular conceptions of morality.¹¹

Forms of public participation

The mode of public participation in the law reform process can vary significantly from one law reform agency to another, and from one inquiry to another. The level of resources is a significant factor in the choice of form. Extensive public consultations are expensive, particularity for a national agency such as the ALRC, which must carry out its activities on an Australia-wide basis.

The nature of the inquiry is also important. Some inquiries do not lend themselves to broad consultation with the general community because their subject matter is specialised, technical or narrow.¹² The ALRC’s report on the Judiciary Act 1903, which was tabled in Parliament in 2001, was such a reference. Although many meetings were conducted with experts in the field during the course of the inquiry, public meetings would not have been useful in grappling with this technical area of ‘lawyers’ law’. By contrast, the genetic information reference has a very broad base in the community. This is reflected in the formal terms of reference, which charge the inquiry to ‘ensure widespread public consultation’.

The most important components of the public consultation program for the genetic information reference have been:

• the 22-member Advisory Committee, which has met twice so far, and the Working Group on Law Enforcement and Evidence, which has met once;

• public meetings, which have been held in every state and territory capital as well as in many large regional centres, including Newcastle, Wollongong, Byron Bay, Townsville, Cairns and Alice Springs;

• submissions from individuals and organisations, of which there are now more than 140; and

• targeted consultations with relevant professionals, organisations, and community groups of which there have been almost 90, involving many hundreds of people.

These elements do not exhaust the available forms of public consultation. In other public policy settings, use is sometimes made of opinion surveys, focus groups and deliberative conferences. However, the methods currently being used for the genetic information reference are both diverse and sufficient for the purposes of the inquiry. It is worth noting that the inquiry has had the benefit of quantitative and qualitative survey data on biotechnology collected by other organisations, such as the federal government agency, Biotechnology Australia. The findings of those surveys are reported in the Issues Paper.¹³

Effective public consultation, whatever its form, requires substantial effort in getting the message out to the community so that members of that community can provide comment and feedback to the inquiry. In the genetic information inquiry this has been achieved in several ways.¹⁴ The ALRC and AHEC have printed 3,000 copies of the Issues Paper, 9,000 genetics brochures, and 45,000 postcards, which have been widely distributed. In addition, the work of the inquiry has been discussed in at least 130 newspaper articles around Australia, as well as in more than 40 radio interviews and four television interviews. Members and staff have also contributed articles to journals and magazines, delivered conference and seminar papers, and spoken to community organisations (such as Rotary) and educational institutions.

Keys to successful public participation

The success of a program of public consultation does not flow automatically from establishing appropriate forms of consultation. The process of participation must also be conducive to a full and frank dialogue between the participants and the law reform agency. The most important elements of this process are as follows.

Confidentiality

The law reform process is an open and transparent one. However, despite the importance of openness, it is vital to respect the confidentiality of those who wish to provide information to an inquiry without the fear of public exposure. The strict maintenance of confidentiality could not be more important than in an inquiry such as that on the protection of human genetic information, where people have been willing to share intimate details about their own, or a family member’s, medical history or personal circumstances. In practice, the overwhelming majority of submissions are public submissions. To date, over 140 submissions have been received in this inquiry, but only about 20 have been given in confidence.

Flexibility

The ALRC and AHEC also have sought to make public consultation more effective by reducing the barriers to public contribution. While parliamentary committees often receive evidence from the public in formal hearings, which may be intimidating to some members of the public, the ALRC has long maintained the importance of allowing multiple channels of approach. Some submissions to the ALRC and AHEC do indeed take the form of lengthy written submissions, addressing nearly every point raised in the inquiry. Other submissions provide the text of detailed published articles or, in one recent submission, a university thesis. At the other end of the spectrum, many submissions identify a single concern through a brief handwritten note, a phone call, or a few emailed dot points.

Staged contribution

Those who are familiar with the law reform process will be aware of the staged approach that is taken to the production of a final report. In the case of the ALRC, this usually involves the production of three separate documents over the life of a reference – an Issues Paper, which outlines the background to the inquiry and the principal issues that it is thought to raise; a Discussion Paper, which provides additional detail and makes tentative proposals for reform; and a final report, which contains the final recommendations to the Attorney-General. This staged approach was pioneered by the English Law Commission in the 1970s and has been described by its first Chairman, Lord Scarman, as perhaps the greatest contribution to the public life of the nation made by the Commission. This process was said to have opened up ‘over a wide field the hitherto secret business of preparing legislation for the consideration of Parliament’.¹⁵ A principal advantage of this staged approach is that it calls forth comment and reaction while ideas are in the process of formulation and before they have crystallised into unshakable recommendations. For example, since the genetic information Issues Paper was released in November 2001, a number of submissions have identified significant problems with the regime for DNA parentage testing, which had been dealt with only briefly in IP 26. These are now the subject of detailed investigation by the inquiry. Moreover, once proposals have been formulated and published in a Discussion Paper (expected in August 2002), the public will have a further opportunity to consider the practicality of concrete reform proposals and to make further submissions.

Utilising existing networks

In inquiries that affect individuals or consumers in a direct way, it is sometimes difficult to get the law reform message out to those affected, and to solicit adequate feedback at a grassroots level. This is the common problem of disaggregation of individual interests. The ALRC has found it invaluable in these circumstances to tap into existing networks of communication within the broader community. For example, there is little possibility that the ALRC and AHEC could inform every person who suffers from a genetic disorder about the existence and progress of the genetic information inquiry. However, there are many genetic support networks in Australia that cater to the needs of those with particular disorders – and many of these have international links. In some states, such as Victoria, there are also umbrella organisations that provide a coordination function for the many condition-specific organisations. Through these organisations, the ALRC and AHEC have been able to tap into the experiences of many individuals who might not otherwise be embraced by the public consultation program.

* Brian Opeskin is a Commissioner of the Australian Law Reform Commission. He is working on the joint inquiry into the protection of human genetic information.

Endnotes

1. M Tilbury, ‘The Changing Fortunes of Law Reform Commissions’ (1994) 19 Alternative Law Journal 202.

2. T Carney, ‘Reforming Child Welfare: Diverting By-ways on the Road to Utopia?’ (1985) 18 Australian & New Zealand Journal of Criminology 238.

3. M Lavarch, ‘Law in Australia: Continuity, Consultation and Change’ (1995) 48(16) Canberra Survey 1.

4. Ibid.

5. P North, ‘Law Reform: Processes and Problems’ (1985) 101 Law Quarterly Review 338, 339.

6. T Carney, ‘Reforming Child Welfare: Diverting By-ways on the Road to Utopia?’ (1985)18 Australian & New Zealand Journal of Criminology 238, 249.

7. R Sackville, ‘The Role of Law Reform Agencies in Australia’ (1985) 59 Australian Law Journal 151, 157.

8. M Lavarch, ‘Law in Australia: Continuity, Consultation and Change’ (1995) 48(16) Canberra Survey 1.

9. Benson and Rothschild, ‘Royal Commissions: A Memorial’ (1982) 60 Public Administration 339, 341. See also T Carney, ‘Reforming Child Welfare: Diverting By-ways on the Road to Utopia?’ (1985) 18 Australian & New Zealand Journal of Criminology 238, 246.

10. D Adams and M Hess, ‘Community in Public Policy: Fad or Foundation?’ (2001) 60 Australian Journal of Public Administration 13, 15-16.

11. See T Carney, ‘Reforming Child Welfare: Diverting By-ways on the Road to Utopia?’ (1985) 18 Australian & New Zealand Journal of Criminology 238, 247; P North, ‘Law Reform: Processes and Problems’ (1985) 101 Law Quarterly Review 338, 341; R Sackville, ‘The Role of Law Reform Agencies in Australia’ (1985) 59 Australian Law Journal 151, 157; L Skene, ‘Consultation: Asking Law Reform Questions and Listening to the Answers’ (1985) 59 Law Institute Journal 453.

12. L Skene, ‘Consultation: Asking Law Reform Questions and Listening to the Answers’ (1985) 59 Law Institute Journal 453, 454.

13. Australian Law Reform Commission/Australian Health Ethics Committee Protection of Human Genetic Information IP 26 (2001) ALRC Sydney, para 2.6-2.14.

14. For a list of the most common forms of consultation undertaken by the ALRC, see House of Representatives Standing Committee on Legal and Constitutional Affairs, Law Reform: The Challenge Continues (the Melham report), (1994), 20.

15. Lord Scarman, quoted in P North, ‘Law Reform: Processes and Problems’ (1985) 101 Law Quarterly Review 338, 338-339.